Down Syndrome May Not Be Big Financial Burden on Families

FRIDAY, Dec. 16, 2016 (HealthDay News) -- Although families with a child with Down syndrome do face extra medical expenses, they probably won't be deeply burdened financially, a new study suggests.

Researchers found that average monthly out-of-pocket medical costs are about $80 more for children with Down syndrome compared to other kids. That adds up to about $18,000 over the first 18 years of life, the study authors said.

"I think many people will be surprised to learn that parents have few extra medical expenses when raising a child or adolescent with Down syndrome, since health insurance covers most of the costs," said study author Dr. Brian Skotko. He is co-director of the Down Syndrome Program at Massachusetts General Hospital in Boston.

"After expectant couples receive a prenatal diagnosis of Down syndrome, many of them search online for information and find the lengthy list of medical conditions that might accompany their child," Skotko explained in a hospital news release.

"This can leave them to wonder whether their families will be facing financial hardship; so we wanted to provide them with accurate data reflecting the current situation," he noted.

The study authors examined a database of insurance claims from 1999 to 2013. The claims came from 82 self-insured Fortune 500 companies in the United States.

The researchers found nearly 5,200 children under the age of 18 with Down syndrome in the database. The investigators compared those kids to a similar group of almost 21,000 children without the condition.

The average annual out-of-pocket medical cost difference was $1,907 for kids with Down syndrome during the first year. The cost difference dipped to $537 annually when children were aged 13 to 18, the study revealed.

Skotko said he hopes the study findings provide some helpful information for families who receive a prenatal diagnosis of Down syndrome.

"Parents today have an array of financial planning and investment options, including special needs trusts, so I hope our findings can help families better prepare for their own financial futures," he said.

The study was published Dec. 14 in the American Journal of Medical Genetics, Part A.